pieces of Ezra

ezra-wall

Although it is hard to see, the picture above is of a piece of our wall which Ezra drew all over with a pen. As a Christmas gift to me, Robyn had a friend of ours (thanks, Michael) remove it from the wall, build this frame and mount the piece in it, and replace the drywall where it was pulled from, freshly painted to match the rest of the wall. I had no idea any of this happened. She gave it to me last night, Christmas Eve, and it is probably the most beautiful gift I’ve ever received. I’m so grateful for Robyn.

There are pieces of Ezra all over our life. This square of drywall, with the most “unimportant” squiggles of misbehavior, makes me catch my breath every time I see it.

In our shower, there is a small ledge at the bottom when you step in. Ezra and I would take showers together, and he would line up all his plastic toys on that ledge – always facing away from him. Each time I’d turn them toward him, he’d turn them away again. Now, every time I take a shower, I think of Ezra lining up his toys on that ledge, facing away from him.

I check the mail and remember Ezra as he would walk around in front of our house, just like in the video below. Such a quiet, “unimportant” moment which I always come back to. A sunny afternoon with my son. Nothing to do but hang out. A piece of Ezra.

A few months ago, a man named David called me after finding Ezra’s story online. His beautiful wife, Lauren, had been diagnosed with neuroblastoma at 29 years old – very rare. Last night, as I was driving home, I saw David had posted she’d died.

On Christmas Eve.

I cried in my car. David – Robyn and I send our love to you. We are crushed to hear this. I am so sorry.

In Lauren and David’s story, there is a piece of Ezra.

Today, as you are surrounded by people you love, and maybe as you grieve ones who aren’t there, find some joy in these “unimportant” moments. They are the stuff our joy is made of. These simple moments are the building blocks we use to create a feeling of being loved, and of loving.

We did many big things with Ezra, and there were many important moments in our life with him. But when I think of our first-born son, I remember him in the back yard covered in leaves. I remember him bobbing his head around in Outback as a song he liked came on. I remember how he would dance, and laugh, and dance, every day he was able. I remember these small moments with such clarity, pain, and joy.

To live your life with someone you love is so significant.

Ezra

Our prayer for you this Christmas season is for many of these “unimportant” moments. For living life with people you love. For smiles, even if they’re with sad eyes, as ours often are. The world is so tragically beautiful – and I am broken in it, and I am awed by it.

From Robyn, myself, and Charley – a Merry Christmas to you and yours.

 

Brooke Hester, and Christmas

I hope the holidays are going well for everyone. I wanted to share the latest 800days video which we published today. Robyn and I visited Grand Rapids a bit ago with AJ and met Brooke Hester and her mom Jessica. Brooke is a spunky little girl, and Jessica is such a passionate mother. We had an amazing day with them, and are grateful they shared their story with us. Please watch and share the video, and consider a Christmas donation to Because of Ezra to help us cure the beast that stole our son from us.

We decorated our Christmas tree this year all in gold, the color of pediatric cancer awareness. We even topped it off with 50 gold Because of Ezra bracelets. It felt weird to pull our Christmas stuff out for the first time in a couple years. Ezra was born August 31st, 2008. That year, 2008, we had a small Christmas in our apartment in Tampa with our firstborn son, Ezra. He was 4 months old. We were a young family starting our lives, and everything was perfect. It felt magical. We sent out Christmas cards for the first time.

October 4th, 2009, we took Ezra to the emergency room. 2 days later he was diagnosed with stage 4 neuroblastoma. October 10th we found out Robyn was pregnant. By the 20th we knew it was twins. We spent Christmas 2009 in our newly purchased home, and 3 days later went back to the hospital for round 4 of chemo. That Christmas was great – a lot of love. The Children’s Cancer Center in Tampa overflowed Ezra’s room with donated Christmas gifts. It was a year of hope, and a year of the unknown.

March 15th, the twins were born. We named them Price and Charley. March 22nd, Price died. I held Robyn in my arms, as she held Price. October 1st, after 192 days in the NICU, Charley finally came home. On October 12th, we left Charley at home with his nana, and headed to Orlando with Ezra. I posted a blog about faith and doubt, sharing some of the struggle we were feeling. November 8, 2010, Ezra died. I was so empty by then, everything felt the same. I could feel nothing, because I was feeling way too much. A generous person flew us to Greece, where Robyn and I stayed for 10 days with no outside contact, and I think that trip may have saved our sanity, and our marriage. We mourned.

We came back just before Christmas 2010, and spent it at home with people we loved. We didn’t decorate. I think there was a tree, it must have been set up by Robyn’s mom, but to this day I don’t think I know where it came from.

Last year, 2011, for Christmas, it hurt too much to do anything. We bought Charley some gifts, and headed to Seattle to spend the holidays with Robyn’s parents. We let them handle the festivities. The overwhelming feeling was of something missing. We had had 3 children, and one was with us that day. It’s not a feeling which one knows what to do with, really.

As 2012 closes, it is strange to look back at where we were a year ago, or two, or three, or 4, and fast forward to now. We have rebuilt our family to something which is strong as a whole, although often we find our individual selves weak. I lean on Robyn all the time, and she on me. I still ask God for direction, although I sometimes find it hard to trust Him. I am trying.

Charley knows we love him. I wonder how all this will process for him later.

There’s a tree in our front room, and I climbed up the oak trees in the front yard a couple weeks ago after my 31st birthday, and wrapped Christmas lights all around them. When the sun goes down, the lights warm the yard and the house with a Christmassy glow. Still, much of it feels like rote.

This year we’ll be surrounded by family and people we love for Christmas. I’ll probably wish you a Merry Christmas here that day. But I’ll tell you – it’s hard, every year. It doesn’t feel right. Our sons were stolen from us, and we love and live as a family continually putting itself back together. I know some of you are, too.

Love you guys. Ezra – we miss you. Merry Christmas.